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Paediatric palliative care in the home
1Soins Spécialisés à domicile, Hôpital Sainte-Justine, Montréal, Québec.
Paediatrics & Child Health
|April 20, 2010
Summary
Palliative home care for children with complex conditions is feasible, with most complications manageable for parents when medical teams are accessible. This approach supports children
Area of Science:
- Pediatric Palliative Care
- Home Healthcare Services
- Terminal Illness Management
Background:
- A review of a pediatric palliative home care program was conducted.
- The program is based in a tertiary care pediatric hospital.
Purpose of the Study:
- To understand home-based complications in pediatric palliative care.
- To determine the extent of nursing support required for children with complex conditions.
Main Methods:
- Descriptive and retrospective study design.
- Data collected from medical and home care charts.
- Included 28 children under 18 with cancer, neurodegenerative disease, or AIDS requiring specialized terminal home care.
Main Results:
- 22 of 28 patients died at home; 2 in hospital as per parental wishes.
- Common complications included pain (25/28 needed opioids), inconsistent pain control (43%), vomiting (39%), respiratory issues (39%), bed sores (25%), and convulsions (25%).
- Parents reported intractable pain, convulsions, and dyspnea as most concerning; home care was discontinued for only 4 patients.
Conclusions:
- Terminal care at home is feasible for children with complex medical needs.
- Effective management of complications is possible with readily available medical team support.
- Parents can tolerate significant complications when medical support is accessible.
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